SAN DIEGO — Unless symptoms worsen, many patients diagnosed with celiac disease as children do not pursue follow-up gastroenterology care as adults, according to data presented at DDW 2016.
“Symptoms drive young adults to seek ongoing care rather than care improving symptom outcomes, as we had initially presumed,” Norelle Reilly, MD, from the division of pediatric gastroenterology and the Celiac Disease Center at Columbia University Medical Center in New York City said during her presentation. “Providers caring for children and adolescents with celiac disease should educate early as to the importance of ongoing care, emphasize the importance of follow-up and the reasons for follow-up, particularly with patients who lack symptoms and may not seek care otherwise and to provide a referral, and formally transition the patient to adult care to improve compliance.”
Reilly and colleagues sent out 33-question survey to nearly 8,000 recipients via the medical center’s proprietary distribution list and received 98 qualified surveys in return.
“A surprising 37% of our respondents identified that they were seeking no ongoing care for celiac disease,” Reilly said. Of these, respondents reported a median interval of care from 2 to 5 years and sometimes as long as 10 years since they had seen a medical provider for their celiac disease. Those who were under care had a median interval of 6 months between provider visits, Reilly said.
Despite expectations, Reilly reported that there was no association between having a provider and gluten-free adherence and no impact of employment or status as a student on whether respondents sought adult care.
Receipt of referral (OR = 4.5; 95% CI, 1.7-11.7) and an understanding of the importance of follow-up (OR = 5.9; 95% CI, 2.1-16.3) most strongly predicted seeking care with an adult gastroenterologist. Yet only 34% of respondents reported receiving a referral to an adult provider, Reilly said.
“Rather than the expected social factors, receipt of a referral and an understanding of the importance of follow-up most strongly predicted seeking care with an adult gastroenterologist,” she said.
Older age at diagnosis (P = .005) and higher celiac symptom index score (P = .02) were also linked to follow-up care with an adult provider, though after multivariate analysis, only age at diagnosis maintained its strength.
Only 40% of those diagnosed younger than 13 years of age sought care as adults and their mean celiac symptom index was 27.7 (95% CI, 26.9-28.4). Conversely, 75% of those diagnosed at age 13 or older sought adult care and their celiac symptom index skewed higher at 32.4 (95% CI, 32.1-32.7).
“Those diagnosed with celiac disease at a later age in childhood had greater celiac symptom index scores or more symptoms, possibly explaining why these individuals who are diagnosed later in adolescence are more likely to see an adult gastroenterologist,” she said.
However, Reilly acknowledged the small sample size and survey design were limiting.
“A large proportion of patients diagnosed with celiac disease in childhood do not seek follow-up care as adults, particularly those diagnosed earlier in childhood who may have fewer ongoing symptoms,” Reilly said. “Patients diagnosed later in childhood had greater frequency of symptoms and sought adult gastroenterology care most predictably.” – by Katrina Altersitz
Reilly N, et al. Abstract #35. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego.
Disclosures: Reilly reports acting as a consultant and being on the advisory committee for ImmusanT.